So, part 2 ended with me in Florida, getting manual treatment for my adhesions. The treatment seemed to help so I was cautiously optimistic, but not exactly hopeful. Even before returning home, I began to reduce some of my pain medications. This must be a careful process or a person endures withdrawal symptoms. Even with a very slow reduction, symptoms can and did occur with me. I understood them and was able to deal with them, although with difficulty and discomfort, knowing that my goal was to get off the medications. Before leaving Florida, the head of the clinic met with me and explained that she thought I could use another 8-10 hours of therapy. I knew she wasn’t just trying to elicit more business as I agreed with her that they had helped me about 70%, but that more work would be needed to get to 100% relief.
As I reduced my medications, a new development occurred. I began to notice the old stomach pain that came with eating that began this unfortunate journey. I went back to my vascular specialist for an ultrasound of my celiac artery. Bad news. It had, in medical jargon, restenosed. In laymen’s terms, it had closed back up 75% due to normal tissue that grows over stents. So now I was back to square one only worse.
I went to another surgeon, one of the heads of UCLA vascular, for a second opinion, and he concurred that another angiogram was warranted to open the artery again before going to the more invasive bypass. So, a week later, there I was back in the O.R. for a 1 1 /2 hour procedure that lasted 4 1/2 hours. It turned out that they were using a laser to “clean out the tissue” and the machine kept overheating. So much for state-of-the-art technology. Also, for some reason the nurses didn’t know how to use this particular machine so my surgeon, while doing his part, also was training the nurses. Great. So, a long procedure, 2 hours flat on my back after, and then unbelievable nausea after for about 2 more hours. Finally I was sent home feeling like death warmed over. As a precaution to help prevent restenosis this time, I was prescribed steriods for a week (no professional baseball for me, I guess) which made me sick to my stomach so my recovery was very difficult. I was also put on Plavix (a blood thinner), which produced a very itchyrash covering about half of my arm. So that was about 6 weeks ago. The artery is now open, the pain after eating is gone, but I still have squeezing and burning pain that is due to the rest of the adhesions that need more work. However, I need to wait about another 5-6 weeks since that is deep work and my physical therapist wants me to be completely healed from my surgery before doing more work.
As my remaining pain is low in my belly as well as in my back, I wanted an abdominal x-ray to make sure that my adhesions weren’t causing any intestinal blockage. I got my doctor to order one and then fired him since I think he is a complete hack. The last time I went to see him, he didn’t even examine me, just insisting that any and all problems I was having were due to my taking pain medications and dismissed any other possibility. While they can cause digestive problems, I am certain that this is not the primary problem. I know my body and so far in all of this I have been right, and many of my doctors wrong.
While having the abdominal x-ray a couple of weeks ago I told the technician about my condition and how I got to be in this predicament. She understood completely because she was suffering a similar problem due to a pelvic surgery she had in the past. Her first doctor wanted to cut her wide open top to bottom and she was in so much pain and so doped up that she almost let him. Her boyfriend strongly suggested that they get a second opinion and sure enough she ended up having a much less invasive procedure. Nonetheless, she did have some adhesions that likely would have been much worse with the first doctor’s plan. She said something that really resonated with me. She said, “you know, we were taught to believe that doctors are gods and that we should not question them.” I think doctors are taught to believe the same. What I have learned is that not only are doctors not gods, but many of them really don’t have any idea, especially when it comes to complicated cases. In fairness, they are at the mercy of insurance companies who leave them little time to make proper diagnoses, but still…I have also learned that they don’t want to admit that anything they do might lead to more problems (adhesions) and that specialists don’t talk to each other. Patients must be our own advocates and ask lots of questions and be very sure about what options are available to us and what possible risks exist. The patient is the consumer and our bodies are the most important things we have. We owe it to ourselves to hold our doctors to the highest level of excellence and when we are dissatisfied, we must find other doctors.
To get back to the 2 sentences that began the post, “My Very Own Special Pain Part 2.”
“she should have undergone vein graft bypass by a serious vascular surgeon
with release of the Arcuate Ligament as her inital surgery.
now she is a chronic pain patient and the likelihood of an easy fix is near 0″
I did have a “serious vascular surgeon,” a renowned doctor with UCLA. He, along with others, felt that the procedure he did was a necessary first step, a less invasive procedure than a graft bypass and that it was worth doing first because if it gave me relief, it would prevent the very invasive bypass. It was the right call as it is always better to try more conservative treatments first, and for my former college mate (a trauma surgeon, not a vascular surgeon) to make this call now is not only not helpful, but completely pointless, seeing as this is 2 1/2 years after the fact. My adhesions would likely have developed regardless of the procedure that has left me with such pain as they are both abdominal surgeries. Also, to presume to make a diagnosis or procedural call without even examining me and looking at all my diagnostics, is, at the very least, irresponsible. I know that “the likelihood of an easy fix is near 0” as I have already been at this for 2 and a half years. ARGH!!!!
So that pretty much brings you up to date. My primary pain is due to adhesions low in my abdomen in my intestinal area. The meds I take and the adhesions can cause digestive difficulties and I won’t go into details here. Suffice it to say that sometimes I don’t feel very well from that too. And sleep is very elusive. Some days I sleep pretty well, other days like shit.
I have a wonderful chiropractor who does so much more than adjust me. She works from a very wholistic perspective and she helps me think through my situation. She has known me for years and been with me through all of this. The main thing is she listens. I also have been getting healing work, massage and energy healing from my sister-in-law, which is also beneficial. Ice packs, my heating pad and my massage chair are my friends. I take more pills in a day than I care to count. I used to the the kind of person that wouldn’t even take a Tylenol for a headache. It is disturbing how quickly and drastically things can change. The cliche is true that if you have your health, you have everything.
While this is all very physically difficult, our physical, emotional and spiritual beings are innately interconnected and the emotional toll is immeasurable. The last time I saw my pain guy, he asked me if I have been moody. Moody? That is an understatement. Some moments I feel ready to fight this thing to the end and other moments I feel like throwing in the towel. And it isn’t day to day, it is truly moment to moment. As I mentioned in part 2 of my story, chronic pain is isolating and depressing and it bears repeating now.
The main thing is that chronic pain takes away a part of who I am, a dependable, reliable, get-things-done kind of person. It also sucks a lot of my energy. It has forced me to re-think everything and I am o.k. with that, but I am not o.k. with not being that person who is available to my kids and my friends and family. It breaks my heart when my 3 year old asks me, “mommy, how did you get so sick?” and “I know your back hurts now, but when your medicine kicks in, you’ll be able to play with me.” These are thoughts that shouldn’t even be in her little 3 year old brain.
Those who live in Los Angeles are familiar with the phrase that goes at the end of every sentence describing how long it takes to get somewhere. That phrase is “depending on traffic.” I have a similar phrase when someone asks me to make plans or my kids ask if we can do something, I always have to respond, “it depends on how I feel.” I want nothing more than for that phrase to be a distant memory in my life.